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If you have ever tried to buy a book as a gift for someone with dementia you may have struggled to find anything suitable; while there is no shortage of self-help titles and memoirs about dementia, there are surprisingly few books for people living with dementia to read for enjoyment.
This is not simply a gap in the market – it’s a real concern because it means that many people living with dementia give up on reading much earlier than they otherwise might.
With dementia, it becomes harder to follow a narrative that twists and turns or to keep track of a cast of characters. Large chunks of text are difficult to digest, especially if the lines are long or the language is complex, and smaller fonts can be hard to read. With some types of dementia, pictures may be difficult to interpret. Subject matter can be a challenge too, since people with dementia may find sad stories disproportionately distressing. It’s not surprising that many give up on reading altogether, adding to the long list of life’s pleasures that fall out of reach as dementia progresses.
But what if books could be written and designed to address some of these difficulties? This is the challenge that Equal Arts set out to address when we established our new dementia-friendly publishing imprint, Open Ended Books, in 2024.
For more than 35 years Equal Arts, a centre for excellence for creative ageing, has been developing opportunities for people living with dementia to connect through creativity to improve wellbeing.
Being just a stone’s throw from the rich archive collections at Newcastle City Library, the idea for a dementia-friendly book focusing on our ethos of being in the moment, and exploring what’s possible rather than relying on reminiscence, was borne.
At the heart of our Reading with Dementia work we’ve set out to create books that;
- Are developed with and for people living with dementia, their families and health and social care professionals.
- Have a story on every two-page spread, with an easy to follow narrative, rich with intriguing details that provoke curiosity and imagination
- Feature a design and content that prompts conversations and an enjoyable shared reading experience for people living with dementia and their family and friends
Our first book, Bewick Tales; Stories from the life and work of Thomas Bewick by Sarah Lawrance, was made possible with funding of £30,000 from Innovate UK - Create Growth Fund, the support of National Trust at Cherryburn, The Bewick Society and Newcastle City Library.
Developing the book saw us regularly taking text extracts, layouts and ideas to members of our focus groups made up of people with lived experience of dementia and health professionals in this field. Feedback was gathered during creative workshops and interviews and after 6 months in March 2024 Bewick Tales was published.
Gill Taylor, from East Durham, received a dementia diagnosis in 2012 and took part in the process. She said: “With dementia we lose our short-term memory, but you don’t lose your intelligence, that desire to learn and stretch yourself doesn’t go away.
“If reading has become frustrating and you don’t know these books are available to you, there’s the risk people will stop reading, stop doing something they’ve enjoyed. People living with dementia can do so much and books like Bewick Tales can support people to continue reading for pleasure and provide the opportunity to continue learning.”
Next steps
The more we explored the market and heard from customers the more it became clear there was a real gap in provision for people living with dementia. This finding was highlighted by the Reading Agency’s 2024 Reading Well for Dementia list. There are very few books on the list aimed at supporting people to continue reading themselves as an enjoyable activity.
We felt this was an area that need greater consideration and began to develop our second book. Due for publication on May 14, 2025, Dorothy Wordsworth’s Grasmere Days tells the story of the life and writings of Dorothy Wordsworth (1771-1855), sister of the poet Wiliam Wordsworth.
Like Bewick Tales, the book has a simple over-arching narrative – the story of Dorothy's life – and each double page spread is designed to provide a satisfying reading experience on its own. This means it doesn’t matter if a reader forgets what went before or puts the book down and opens it again at another page. Each page has a mixture of words and images, with the text arranged in short, manageable sections.
Once the text was drafted, we worked closely with our designer Wendy Lewis to shape the book. All our page layout and design decisions, including the larger than usual font size and generous line spacing are the result of consultation with readers. We also consulted on the size and format of the book: a landscape shape was found to be the best to support both individual and shared reading.
Readers of Bewick Tales said they particularly valued the open-ended questions which act as conversation starters or prompts for the imagination. So, for Dorothy Wordsworth’s Grasmere Days we added more of these, though hopefully not so many as to become formulaic; importantly, there are no correct answers – it's all about sparking the imagination.
We thought long and hard about what to include in the book’s blurb; if we mention the word ‘dementia’ will some readers be deterred? If we don’t brand our books as ‘dementia-friendly’ how will people looking to buy a book for themselves, or a friend or relative with dementia find them?
We arrived at a compromise: on the front cover is a removable ‘dementia-friendly’ sticker; alongside this feedback from one of our readers Anita Goundry, who lives with young onset dementia and Alzheimer’s disease.
She said: “I love everything about this book. It’s clear and easy to read, with a good balance of text and pictures and I learned so much. The questions give you something different to talk about together, and I like the way that the book encourages you to get out and visit new places. I struggle to remember what I’ve read when I turn the page but this book is a pleasure to read again and again.”
Dorothy Wordsworth’s Grasmere Days, written by Sarah Lawrance and designed by Wendy Lewis is published on May 14 by Open Ended Books, RRP £15.99 here: https://www.equalarts.org.uk/shop
Bewick Tales is also available at £15.99. Proceeds from the book support the work of Equal Arts, registered charity no. 517352
Sarah Lawrance is a writer and curator and now leads on dementia-friendly reading and publishing at Equal Arts.
